The 2010 WAGR Weekend was in Maryland. The annual event brings together families from all over the world whose lives are affected by WAGR syndrome. In July, the event will be in Southgate. (Photo courtesy of Annie Prusakiewicz)
ALLEN PARK — In the middle of Annie Prusakiewicz’s presentation at a recent City Council meeting, her voice got shaky and her eyes started to well with tears.“The reason why I’m here today is to ask the council here to recognize our organization as a local civic organization,” she said.With the council’s blessing, she could apply for a gaming license to raise money for her cause.Prusakiewicz is co-founder of the International WAGR Syndrome Association, or IWSA.WAGR (pronounced “wagger”) is an acronym that covers Wilms’ tumor, or cancer of the kidney; aniridia, or absence of the iris from one’s eye; genital anomalies; and mental retardation.Prusakiewicz, whose son was diagnosed with WAGR syndrome at 10 days old, prefers to think of it as an acronym for “Winning Attitudes, Great Rewards.” Her son now is 14.those with WAGR syndrome also suffer from sinus and sensory issues, problems with behavior, anxiety, pancreatitis and seizures.Only a few hundred cases of WAGR syndrome have been reported worldwide. Prusakiewicz estimates that it affects one in every 1 million people.Prusakiewicz’s speech at the Nov. 16 meeting moved the council.“I really don’t consider myself a great public speaker,” she said later. “somehow, that changes when you are speaking passionately about something that you truly love.”The council ultimately approved the petition, which gave Prusakiewicz the green light to pursue a gaming license.“I am so happy the Allen Park City Council approved our request,” she said. “We are a small organization with a small operating budget. We rely mostly on personal, tax-deductible contributions to fund the programs we offer our families at no cost.”With a gaming license, Prusakiewicz will be able to organize a poker event to raise money for the group’s annual WAGR Weekend, which will be in Southgate in July.She’s already put in her request to the state and said she will hear back in four weeks.“WAGR Weekend brings together families of children with WAGR syndrome from all over the world,” Prusakiewicz said.The IWSA represents families in 23 countries.There is no cure for WAGR syndrome — only treatment for the symptoms. When her son was diagnosed, Prusakiewicz said she and her husband “had more questions than the doctors had answers.”“My husband and I made it our mission to know everything about WAGR syndrome in order to help (our son) reach his fullest potential,” she said.“Of course, it’s not always easy to keep a positive attitude. We’re constantly fighting to get our children the best education, the best medical treatment and fighting to keep our heads up.“The reward is seeing your child happy … and knowing we’re doing everything we can to make their lives the best they can be.”for more information on WAGR syndrome and the IWSA, visit wagr.orgContact Staff Writer Peter Jurich at pjurich@heritage.com or 1-734-246-0867.
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